IVIG is my Miracle Drug

gab,

yes, it can work that fast on a few. what it did was get rid of the bad gbs antibodies in your blood. as long as your immune system has stopped producing any more of those antibodies, it is permanent. if still producing or you have another relapse in the future, you may need more ivig. take care. be well.

gene gbs 8-99
in numbers there is strength

You see, there are miracles. I smiled the whole time I read your post. I can see the look of excitement on your face! It is the same look that Kevin and I get.

Be careful as to not overdue it. You are not in the same shape you were. Kevin ALWAYS gets this sense of elation and runs out the door the day after his treatments and plays football with the guys and almost always comes in with a sprained ankle (as he did yesterday) His legs can move as fast as they used to but the muscles are not yet in that shape.
Regarding your statement about regeneration, read my thread on ivig is over, confusion. I think you present the same way as Kevin being that you get instantaneous relief. I believe it is just an inflamation ON TOP of the myelin. I don’t think Kevin actually has a destruction of the myelin. Just my thoughts.

From what I can understand, the ivig is what the immune system is attacking instead of the myelin. Maybe some can last longer between infussions because the level of their cidp attacks are slower. Who knows? What I DO know is ivig is working for you too!!! Keep faith and enjoy your life again.
Good Luck!
Dawn Kevies mom

gab,

you said – ‘It still doesn’t make sense though, I didn’t remyelinate in 2 days.’
i have no answer for it either.

you said – ‘Is it that these bad GBS antibodies are constantly irritating my nerves and the IVIG takes those bad antibodies away?’
basically, yes. the antibodies destroy the nerves.

take care. be well.
gene gbs 8-99
in numbers there is strength

gab I am so glad you are feeling so much better!! Remember, like the others said, dont overdo it.

I have a question about ivig….if someone didnt get treatment but is essentially better (at least way better than at onset) but still has issues, does that mean there are still antibodies?? I would hate for those buggars to still be in me lurking around, even though I have no insurance now and cant seek out ivig I still wonder if it would do a world of good. I mean they say that ya gotta have the treatment within a certain time frame, but what if you dont have cipd would it still be immensely helpful?

FOM,

In GBS ……. IVIg works when your myelin/axon is being attacked, just as you stated. Once the GBS attack is over, IVIg really has no value of so to speak. Oh it may give you boost/high for a few days, but at a the price IVIg is, there is no way that any insurance company would pay to get that boost for a couple of days, just for your body to return to what it was before. Unfortunately, there are many CIDP’ers who arent been given IVIg because of ‘the shortage’ or because of the price.

I know how difficult it is to try and function some days (often weeks) – but, you have to remember you are only in your second year of recovery. I dont want to push meds, but decades after my diagnosis, I take something to help me function during the day. I think this is something you should look at later down the line once you feel your recovery is at its best, truly I feel it is still too soon to take that step until you studied the pro’s and con’s of taking such medication so that you dont push your body beyond where it should be at this point.

fom,

as ali says, when the attack is over & the gbs antibodies are cleared from your blood, it doesn’t help. but you bring out a good point. what if, besides your residuals, your immune sys is generating a small amt of the bad gbs antibodies. you might never know it figuring it is all residuals. hmmm… take care. be well.

gene gbs 8-99
in numbers there is strength

Gabrielle,
I am a little confused. Do you have gbs or cidp? If cidp, there will be additional treatments. Kevin is going to get a couple of loading dose sessions once a month and at 2g/kg. Then we will switch to a maintanence dose 1g/kg every 4-6 weeks (to be determined) Everyone’s maintanence schedule is different based on their individual progression or regression. It is like tunning a piano, a fine art of figuring out YOUR needs.

You may need a few loading dose treatment sessions to get things under control and to see a marked difference in your symptoms. You did say that your walking has already improved, so that is a good sign to me.

Now, if you have gbs, I can’t see ivig working for you other than as Ali mentioned as a short term energy boost. The only way to say cidp for sure is worsenning of ncv/emg from last, clinical weakness progression with no improvement when rested for a while, ofr a l/p to confirm additional elevation of protein. Howevewr, I believe that may not be an option at this point since you just had ivig.

good luck.
Dawn

gab,

could be that you over did it & your residuals are giving you trouble big time. by the time you feel tired it is too late. rest a lot lying down for weeks, if necessary, & see if it helps. also walk much less even if you feel up to it.

with the ivig new in you, it seems unlikely but possible, that you are under a real gbs attack. take care. be well.

gene gbs 8-99
in numbers there is strength